April 26

Madelyn went without food from 3:30am on Monday morning until 10am.  Her spinal tap was scheduled for 11:00am, but when her numbers came in at 10am it was canceled.  Madelyn's ANC had to be above 750 to start the second phase of Delayed Intensification and she wasn't there.  I immediately brought out the snacks and MJ started eating as she sat on the bed in the doctor's office.  


Hem 36.4    Plat 254    WBC 2.6    ANC 564


So she has a week break and we begin again on Monday May 2nd.  I am actually glad for it.  I was relieved when we left the hospital.  It is disappointing to be adding an additional week to our time in Seattle and away from home.  But I don't care.  Madelyn needs it.  She has been feeling 100 percent better since last Friday.  She needs a week of feeling good before she starts this next hard part.  She is feeling good and is happy.  I need this too.


Her mucusitis is gone.  Her backed up stool is cleared thanks to the Miralax (obvious after, poor thing, had three accidents in her pants today).  The only drugs to go into her system today were her weekly Bactrim antibiotics.  (From the day of diagnosis and for the next 2 1/2 years, she will take a antibiotic on Mondays and Tuesdays to prevent a life threatening type of lung infection that immune-suppressed patients are susceptible to).  No pain meds, no anti-nausea meds, no anti-histamines - nothing!!! 


We spent Monday afternoon at my sister Jen's house.  We all needed that day/night of laughter and fun.  We had pizza and the kids were busy playing, building, laughing and not sharing.  Then they came over to our place today and Wyatt stayed with us while my sister went home to do a few things.  It was so great for Sophia.  Wyatt is about 9 months older than her and they just had a blast.  She climbed into bed herself tonight and was totally PASSED out at 7:30pm.


So some pictures from the last few very happy and busy days around here:

Don't even think of taking my watermellon.

Watermellon.  Great way to get fluids in and make two little girls verrrrry happy.

Preparing for the EB.  Madelyn drew some pictures for Mr. Easter Bunny and placed it by her basket with a note: "You can take it (the picture) Easter Bunny."

Her pictures for the EB.   I love the bunnies and carrots.

MAJOR crafting going on around here...

I am super fast shopping cart girl.  With no pants.

Little example of MJs difficulty getting up off the floor; needs the bed for support.

Captian Crazy Pants.  She is non-stop these days.

Example of MJs complex drawings.  Each box is a different mini-picture with significant places or people.  Pictures include our house, plane to Switzerland, Mommy and Madelyn together, Alaina and Avi, Daddy and Sister, a big M for Madelyn, swimming pool in Mexico, etc, etc.  I love this picture.

On the beautiful day Saturday, the girls and I went to Magnuson Park and picked dandelions.  We watched the ducks and listened to a band practicing.

 

Magnuson Park, huge park right next to our apartment.

Play, play, play... so nice to see them playing together again...

 There's my girl again...

Easter morning.  Nothing better than eating chocolate in your night gown. 

This is the life.  Chocolate on a stick at 7:30am.

We had an Easter lunch with my parents, my Grandpa (MJ and Phia's Great Grandpa) and Peter's Dad.  Here the girls are heading out for "Mommy and Daddy's Easter Egg Hunt."  Grandpa Jim, Grandpa Urs and Daddy hid all the eggs for the girls to find... they loooooved it.

My dynamos.

April 23

So as I mentioned last night, I have three mom's I chat with online.  All three have kids between the ages of 3.5 - 4.5 with Pre-B-Cell ALL (Leukemia) are Standard Risk, Early Rapid Responders and were diagnosed within just a few days of Madelyn.  We are all going through this tough period together - Delayed Intensification.  I asked Theresea, Mom of Nicholas, if I could repost this on my blog.  I thought it was so funny I nearly peed my pants.  This may be because I have first hand experience with a kid on steroids, but hopefully you will also find it funny.  Young kids on steroids is one of the most challenging parental situations you should hope not to face; but the things we hear!  Too funny.


Nicholas On Pizza

"My eyes are sad, because I don't know where the pizza is." (9:15 am)

Mom: "I love you, Nicholas." 
N: "I love pizza."

"I want vegetable pizza with no vegetables."

"This place doesn't have pizza like Pizza Hot or Pizza Hut."  (at the grocery store, buying ham for him)

"I want the tall slices of pizza.  Not the little short ones." 



Madelyn On Steroids


Just re-read all the following with either asparagus or corn in place of pizza.  Thats-a some stinky pee...

April 22

I thought we'd know next weeks schedule after today. But, alas, we do not. Her counts were:

Hem 39.5    Plat 157   WBC 5.4   ANC 335

The oncologist who saw us today (not her usual doctor because this was a post-inpatient followup appointment) thought Madelyn's counts could still rebound by Monday.  Her ANC needs to be above 750 to move into the second phase of Delayed Intensification.  I can't imagine she'll be there by Monday right now, but we will see.  She will be NPO (no food or drink) after 3:30am that morning.  So I will bring lots of snacks with us.  If she does not end up moving forward with her battery of chemo, as scheduled, she can at least EAT!

Madelyn has been feeling good since Thursday afternoon.  This means my shoulders have begun to relax and are not located next to my ears anymore.  She pooped THREE times today.  Oh ya!  We're doing the poo-poo dance.  Ah huh!  You go girl.  Woo hoo!!  Miralax is our friend.  

We had a good day except for a moment when the girls were taking a bath together, started fighting over an alligator and a My-Little-Pony, I was trying to pee and email the studio about work at the same time.  Multi-tasking to the extreme.  Not pretty.

So one more thing before I sign off tonight.  Madelyn has been increasingly more stressed during the accessing of her port recently.  Crying, screaming, anxiety.  Today Peter asked that Child Life come.  Madelyn loved having someone come and chat with her directly.  She loves talking with people and telling them her stories.  Then, this young, sweet Theresa from Child Life (did I mention how old I feel these days), followed us into the room for accessing and suggested that she use an IPad.  MJ played games, popped bubbles and ... well, loved it.  She barely noticed the needle going in other than to say "make sure and count." 

I also have a group of three other women from Edmonton, AB, Wisconsin and Los Angeles that I email with.  Their cuties are between 3 1/2-4 1/2 yrs and are in the exact same stage of treatment, with the exact same type of Leukemia, with the exact same indicators (Standard Risk, Early Rapid Responders) .  It has been very nice chatting with them.  Well, they have just been commenting that the IPad should be prescribed to parents who have children facing cancer.  Needless to say, we will be the proud owners of an IPad soon.  It will be Madelyn's IPad.

April 19 / Out of the hospital!!

We are out of the hospital, back at the apartment ... and bald tonight.


Here are the last couple days in pictures:

Madelyn received her last dose of Doxorubicion on Monday April 11.  Side effects started to rear their ugly head only on Friday.  This picture is from Saturday after we figured out she had mucusitis in the GI track.  We began to see significant hair loss this day too.  The pain meds got her off the couch Saturday, but she is still not feeling great.  Here she is making pizza's for dinner.

Team Madelyn off to Children's at 7:45am yesterday morning.  Yes, that is a potty chair.  Go hard or go home.  No more diapers, no more diapers, no more diapers...

Not feeling good from the start of the day.  She dressed, brushed her teeth, brushed her hair and ate breakfast while laying in bed.

Coloring while waiting...

  

Waiting room table game.

A very sad and stressful time getting accessed.  She hates the smell of the cleaning swabs.

And Sophia read a book and watched TV during Madelyn's torment.

Here she is waiting for the doctor. This is unusual for her.  When the doctor examined her a little while later she started screaming when he touched her belly.  She had some morphine shortly after and headed down to xray.  After another very vocal episode of pain followed by morphine, the attending decided to keep her overnight for pain management and observation.

Major hair fall out in the afternoon waiting to go to the SCCA floor.

... and more coloring...

 When she woke up this morning she had very little hair left and hair was everywhere.  I asked her if she wanted to buzz it off.  She said yes.

A cut for the long stuff... cool spikes.... then the buzz.

She wanted to keep the hair.  Here she is collecting it in her bag.

I know she looks sad in this picture, but she is just concentrating.  She has been super absorbed in her coloring.  This hospital visit she only requested TV once and only for 30 minutes.  She colored or we worked on her letters and reading.  

Auntie Jen came today to take us back to the apartment as Peter and Phia are in Anacortes tonight.  She brought with her Princess tattoos for decorating her new look.  We put four all over her head.  She loved it, but shortly after became sick and threw up.

Getting her ready for bed tonight I said "come on Madelyn, let's go brush your teeth and brush your hair" wondering if she'd get the joke.  She thought it was pretty funny.  "Mama you're crazy."


I thought the no hair thing would bother me a lot more than it has... so far.  Let's see how I feel in a couple days.  Of course it's not the hair that's the issue, but the reason why it's gone.  For now though, Madelyn and I are both enjoying her new look.  She looks beautiful.  I love kissing that bald head.  It reminds me how thankful I am that I have that head to kiss.

April 18

Long, hard day for MJ.  We arrived at Children's at 7:45am for labs and then a doctor's visit. Madelyn and I are still here.  


She has been incredibly tired since Thursday evening.  Friday she was despondent.  Saturday I deduced she had mucusitis.  Sunday she lacked energy and needed pain meds all day, BUT we were able to get to the park.  It made us so happy to see her smiling and genuinely enjoying herself.  It also made us sad because she was so obviously a sick child.  She needed serious help to get up stairs and to walk form one place to the next.


I was worried when we went in this morning that she might need a transfusion.  Her platelets we low, but not terribly low.  


Hem 40.1    Plat  182    WBC 2.3    ANC 722


Her ANC has to be above 750 to start the second phase of Delayed Intensification.  Scheduled for April 25.  I'm not sure we'll start on time.  Her counts will still be dropping this week so she might not recover in time to begin on schedule.


She had incredible belly and throat pain during her doctors visit.  She was screaming at the top of her lungs and crying uncontrollably.  It was awful.  They gave her some morphine, ordered a belly xray and gave her some fluids via IV.  Even though she's had regular BMs lately (I am Little-Miss-Anal-Kathy recording eeeeeeverything), her system is backed up.  She has started Miralax to get things "in-gear".  The mucusitis is in full swing and more morphine was needed by about 2pm.  Literally she was just full-tilt screaming in pain.  It was sooooo hard for her and us.  The doctor decided we should be inpatient tonight to get the pain under control. 


The morphine did it's job and she finally had a meal - a big meal - at dinner.  And then she threw it up.  So she had another meal.  


She also lost about 75 percent of her hair TODAY.  Big bald patches.  She wants to collect it. We have this big wad of it - probably the size of a shoe - in a ziploc.  I keep talking about all the cool things we can do with a bald head - tattoos, head painting, our cool wigs and hats.  She seems ok, but she hasn't seen herself yet either.


She hasn't wanted to watch TV this visit.  That tells you how truly awful she feels.  She only wanted to read one book.  All she wants to do is color her pictures.  In a little notepad today she had a whole page full of suns with smiley faces.  Another page full of houses.  Another full of stars.  And I mean packed in there.  Not a blank space to be had on the page.  I find this very interesting.  I don't know how to decipher it, but it is obviously telling of what is going on inside her head.


This morning she asked me when her treatments were going to be done with a long, sad face and a couple of tears.  She said she was tired of going to the hospital and taking medicines.  "When am I going to get better Mommy?"  I wish I could tell her "soon baby soon."

Firecracker

Do you ever feel like a plastic bag
Drifting through the wind
Wanting to start again

Do you ever feel, feel so paper thin
Like a house of cards
One blow from caving in

Do you ever feel already buried deep
Six feet under scream
But no one seems to hear a thing

Do you know that there's still a chance for you
Cause there's a spark in you

You just gotta ignite the light
And let it shine
Just own the night
Like the Fourth of July

Cause baby you're a firework
Come on show 'em what you're worth
Make 'em go "Oh, oh, oh!"
As you shoot across the sky-y-y

Baby you're a firework
Come on let your colors burst
Make 'em go "Oh, oh, oh!"
You're gunna leave 'em fallin' down-own-own

You don't have to feel like a waste of space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow

Maybe you're reason why all the doors are closed
So you could open one that leads you to the perfect road

Like a lightning bolt, your heart will blow
And when it's time, you'll know

You just gotta ignite the light
And let it shine
Just own the night
Like the Fourth of July

Cause baby you're a firework
Come on show 'em what you're worth
Make 'em go "Oh, oh, oh!"
As you shoot across the sky-y-y

Baby you're a firework
Come on let your colors burst
Make 'em go "Oh, oh, oh!"
You're gonna leave 'em all in awe-awe-awe"


Boom, boom, boom
Even brighter than the moon, moon, moon
It's always been inside of you, you, you
And now it's time to let it through

Cause baby you're a firework
Come on show 'em what your worth
Make 'em go "Oh, oh, oh!"
As you shoot across the sky-y-y

Baby you're a firework
Come on slet your colors burst
Make 'em go "Oh, oh, oh!"
You're gonna leave 'em all in awe-awe-awe

Boom, boom, boom
Even brighter than the moon, moon, moon
Boom, boom, boom
Even brighter than the moon, moon, moon
***********
When you want to think of Madelyn... listen to this song.  "Firecracker" by Katy Perry.  This is mine and Peter's song for MJ ...

April 16

It was a long night, but Madelyn did just fine with no more Benadryl.  She was awake a lot though due to belly and throat pain.  She also had a long and very painful BM.  I finally put it all together this morning when I decided to try giving her pain medicine and she felt better.  I called the the on-call Oncology doctor confirmed it.  She (most likely) has mucositis of the GI track.  A common side effect of chemotherapy, especially the Doxorubicion.  Mucositis is tiny ulcers (soars) along her digestive track and are painful.  It is one of those side effects you can only wait to resolve itself and if she has a low ANC (which she probably does right now) it will take longer.  This is probably why all she has been wanting to eat is cold corn and hasn't been drinking well.


The medicine has been working for the pain today, but she is obviously drugged.  I much prefer this though to the total disconnection she had from us yesterday.  It was scary.  Today MJ has slow, slurred speech... but a lot of speech.  She can't stop talking.  Talking about lots of happy things in a slow, monotone manner.   It is hilarious.


We went to my sisters this morning.  She sat with Aunt Jen and "had a good chat" (direct quote from MJ).  Jen made lunch for us and she sat at the kitchen table and talked with her - continuously.  (I played with Sophia, Soren and Wyatt - my nephews - love those two funny boys). Madelyn wanted to come back to the apartment to take a nap and was laying her head down on the kitchen table. But she didn't want to leave until 12:30pm so she could show Auntie how she swallowed pills.  Madelyn explained to her, in great detail, exactly how its done.  It was probably a two paragraph description.


She is also having a lot of trouble walking now.  The Peripheral Neuropathy plus dizziness from drugs are requiring her to have a hand to hold whenever she walks.  She can't go up or down stairs without assistance.


Luckily all three of us were able to take a nap this afternoon.  I had approximately four hours sleep between midnight and 7am last night so I was bushed by the afternoon.  Peter went home last night and will be in Anacortes until Sunday morning.  We have a doctor's visit on Monday morning and then he will be back in Anacortes that evening.  Luckily Madelyn has a rest week coming up.  No chemotherapy to get her counts recovered and her body recovered before the really big two weeks starting April 25.

April 15

Madelyn has been pretty lethargic and despondent all day.  She took a morning and afternoon nap and went to bed at 5:30pm.  She was sprawled out on the couch when she was up and it was hard to get her to talk about much.  It was disturbing and a big turn around from the previous days of moodiness.  I called Hem/Onc (Hematology/Oncology) and they decided to stop the Benadryl (continuing with the other two anti-histamines).  Now I am sitting here frightened that she will have respiratory issues.  I have been checking on her every 20 minutes since 5:30pm (when she went to bed).  It is going to be a long night.  


And then poor Peter accidently had a bunch of peanut butter today.  He was miserable and was in a Benadryl stouper.  A highlight of the day though was a visit from our friends the Hernandez'.  I immediately took over their new baby girl (5 weeks old) and had warm, snuggly time with a passed out baby.  While Peter and Madelyn were napping I spent a long time with Sophia at the little parks here at the apartment complex.  I swear she must have swung for 45 minutes!  Although she told me I'm not as good at the under-dog as Daddy.


I took sometime with Sophia on Wednesday - just the two of us.  We had girl chat over chocolate milk and espresso at Starbucks, watched water fountains, picked out a craft to do with sister and had some playground time.  She also had her first full hair cut:

Since Monday, Madelyn hasn't wanted to do much but lie on the couch.  Here she is working on the project Sophia picked out.

Got her to the table to work on her letters on Wednesday... AND she was joking around!  So nice to see a smile rather than the eyebrows scrunched together.

Still drawing a ton except for today.  We couldn't get her interested in anything today.  Here are the little books she has been working on.  She put together a bag of materials that she keeps next to her bed: little pieces of paper she cut out, the scissors, tape and a pen.

Physical Therapy on Thursday at the hospital's Therapy pool.

Love this... the physical therapists at Children's are so inventive.  Here she is pretending to be a squirrel, squatting and then standing up and looking over the top of floor.  She is looking for bunnies.

Daddy wearing Phia's goggles :)